The Future of Disability in America (2007) / Chapter Skim
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2 Definition and Monitoring of Disability
2 Definition and Monitoring of Disability
Pages 35-64
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From page 35... ...
More important, the point that Snyder made in the quotation presented above -- that disability is not an individual attribute but an interaction between the individual and the environment -- increasingly informs discussions of disability and disability policy. The Americans with Disabilities Act and other public policies that are intended to eliminate or reduce environmental barriers to independence and community integration illustrate the point.
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From page 36... ...
The chapter also reviews current disability monitoring activities, evaluates progress since publication of the 1991 and 1997 Institute of Medicine (IOM) reports on disability, and sets forth recommendations for further improvements in monitoring programs.
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From page 37... ...
(As defined in Chapter 5 of this report, secondary conditions are potentially preventable health conditions for which individuals with a primary health condition are at increased risk.) In addition, the two reports included quality of life as an important concept in understanding the impact of health conditions, impairments, functional limitations, and disabilities on people's sense of well-being in relation to their personal goals and expectations.
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From page 38... ...
Thus, the term disability serves -- and is used in this report -- as an umbrella term for impairments, actiity limitations, and participation restrictions. The ICF framework starts with the concept of a health condition, a general term for a disease, disorder, injury, trauma, congenital anomaly, or genetic characteristic.
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From page 39... ...
The IOM concept of functional limitations shares elements with the ICF concepts of impairment (e.g., for limitations in hearing) and activity limitation (e.g., for limitations in mobility)
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From page 40... ...
Thus some researchers might consider difficulty in preparing meals to be an activity limitation, whereas others might categorize it as a participation restriction. As discussed below, this lack of conceptual specificity is one of the shortcomings in the ICF.
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From page 41... ...
1 DEFINITION AND MONITORING OF DISABILITY BOX 2-2 Components and Domains of Human Functioning in the International Classification of Functioning, Disability and Health Body Function and Structure Body Function: Body Structure: Mental functions Structure of the nervous system Sensory functions and pain Eye, ear, and related structures Voice and speech functions Structures involved in voice and speech Functions of the cardiovascular, Structure of the cardiovascular, immu hematological, immunological, and nological, and respiratory systems respiratory systems Functions of the digestive, metabolic, Structures related to the digestive, and endocrine systems metabolic, and endocrine systems Genitourinary and reproductive Structure related to genitourinary and functions reproductive systems Neuromusculoskeletal and movement- Structures related to movement related functions Functions of the skin and related Skin and related structures structures Activities and Participation Learning and applying knowledge General tasks and demands Communication Mobility Self-care Domestic life Interpersonal interactions and relationships Major life areas Community, social, and civic life Environmental Factors Products and technology Natural environment and human-made changes to the environment Support and relationships Attitudes Services, systems, and policies Personal Factors Not categorized SOURCE: WHO (2001, pp.
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From page 42... ...
At the same time, the committee has identified directions for improving and refining the ICF conceptual framework. These directions include developing activity-participation distinctions and measures, adding quality of life as a key concept in understanding disability, developing domains for personal factors, recognizing secondary health conditions related to a primary health condition, further developing environmental factors, and incorporating a dynamic model of the enabling/disabling process.
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From page 43... ...
If the differences between these two concepts are not clarified or otherwise resolved in some coherent fashion and if different users distinguish these core concepts in different ways, the goal of a universal and standard language for classifying individuals with respect to the burden of health conditions will remain unfulfilled. For example, Schuntermann (2005)
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From page 44... ...
Developing the conceptual base for such differentiation or substituting some alternative conceptualization is a key step that needs to be taken to clarify and refine the ICF so that it provides a better foundation for disability monitoring and research. Adding Quality of Life to the Framework The committee is also concerned that the concept of quality of life is not explicitly named or defined as an ICF component or element, although "establishing links" with this concept is mentioned as a future direction in the ICF manual.7 In other documents, WHO has defined quality of life as "the perception of individuals of their position in life, in the context of the culture and value systems in which they live and in relation to their goals, expectations, standards, and concerns" (WHOQOL, 1993, p.
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From page 45... ...
Census Bureau and other survey questions used to identify people with disabilities. A WHO instrument asks some similar questions, for example, "How well are you able to get around?
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From page 46... ...
The contribution of such conditions to disability and the interactions of individual and environmental characteristics as they affect the development or prevention of secondary conditions should be incorporated into future refinements of the ICF framework. Such recognition would not require modifications to the coding structure of the ICF because these conditions can be coded by using the ICD, as is done for primary health conditions.
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From page 47... ...
One important obstacle to the development of a conceptually useful, testable model is the lack of agreement on these different states, that is, on what qualifies as an activity limitation or as a participation restriction. A NATIONAL DISABILITY MONITORING SYSTEM The lack of a national disability monitoring (surveillance)
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From page 48... ...
0–12 Survey of Income and Program Participation All No (1983–present) Adult Disability Topical Module Child Disability Topical Module aThe Behavioral Risk Factor Surveillance System has had occasional childhood modules under its Child Health Assessment and Monitoring Program.
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From page 49... ...
. The report suggested that the National Health Interview Survey should be revised to include more items relevant to understanding disability.
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From page 50... ...
Since 1991, the CDC's National Center for Health Statistics launched one major survey that focused on disability -- the 1994–1995 Disability Supplement to the yearly National Health Interview Survey. In many ways, this supplemental survey was an important starting point for the kind of detailed surveillance recommended in 1991 (see NCHS [2006a]
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From page 51... ...
For the 2000 census, BOX 2-3 Disability-Related Content in the Redesigned National Health Interview Survey For each family member: • The need for help with personal care needs (such as eating, bathing, dress ing, or getting around) • The need for help with routine needs (such as everyday household chores or doing necessary business, shopping, or getting around for other purposes)
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From page 52... ...
Census Bureau tested a revised set of items recommended by the American Community Survey Disability Work Group (Miller and DeMaio, 2006)
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From page 53... ...
. Through its Child Health Assessment and Monitoring Program, the Behavioral Risk Factor Surveillance System has also been used occasionally to provide uniform data on the health conditions and behavioral risks of children and adolescents, but the topic of disability per se has not been a focus.12 Items related to secondary conditions, which are also relevant for studying issues related to aging with a disability, have been fielded by Washington State but are not part of the core survey.13 Since 1991, the number of surveys focused on older adults has expanded.
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From page 54... ...
As noted above, many key national surveys do not include individuals living in institutional settings. For the purposes of profiling and monitoring disability, the exclusion of people living in residential care settings, such as nursing homes and group homes, is a shortcoming because these individuals often are -- by virtue of their qualification for this type of care -- significantly limited physically or cognitively, or both.
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From page 55... ...
in the population has been a primary aim of the National Health Interview Survey, whereas the Behavioral Risk Factor Surveillance System tracks health conditions and risk behaviors. The Current Population Survey, the nation's primary data source on employment statistics, includes a measure of work limitations, which can be tracked over time (Burkhauser et al.
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From page 56... ...
is jointly determined by the characteristics of individuals and their environment. It further recommended that these survey items should be incorporated into ongoing surveys, including the National Health Interview Survey, the Current Population Survey, and the Survey of Income and Program Participation.
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From page 57... ...
have provided important insights into the dynamics of disability and risk factors related to disability onset and recovery in late life. As discussed earlier in this chapter, these surveys most often include measures of basic activity limitations (usually ADLs and IADLs)
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From page 58... ...
Since 1986, detailed information has been collected about the health, functioning, and 16 As defined by the U.S. Maternal and Child Health Bureau, children with special health care needs are "those who have or are at increased risk for a chronic physical, developmental, behavioral, or emotional condition and who also require health and related services of a type or amount beyond that required by children generally" (McPherson et al., 1998, p.
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From page 59... ...
RECOMMENDATIONS Since the publication of the 1991 IOM report Disability in America, many agencies and individuals have taken significant steps to advance the conceptual understanding of disability and to improve aspects of disability assessment and monitoring. At the same time, continued improvements are needed to prepare the country for the future and the challenges that it entails.
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From page 60... ...
Recommendation 2.1: The National Center for Health Statistics, the U.S. Census Bureau, the Bureau of Labor Statistics, and other relevant government units involved in disability monitoring should adopt the In ternational Classification of Functioning, Health and Disability (ICF)
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From page 61... ...
It therefore does not recommend that a single measure of disability be used in all national disability monitoring programs or that every component of the ICF be equally emphasized in all activities. Specific steps can, however, be taken to move toward greater consistency in disability assessment and monitoring, for example, developing, testing, and then adopting a set of core survey questions.
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From page 62... ...
, and the Agency for Healthcare Research and Quality. Improving the Scope and Quality of National Disability Monitoring Data In addition to adopting the ICF framework, which itself would help harmonize the country's disability monitoring efforts, the federal government should move in other ways toward a more coherent disability monitoring program.
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From page 63... ...
Action by the CDC, in particular, the National Center for Health Statistics, is critical to an improved disability monitoring system. Priorities include the development of a new panel survey of disability as a supplement to the National Health Interview Survey and enhancements to the Behavioral Risk Factor Surveillance System to provide more comprehensive state-specific estimates of disability.
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From page 64... ...
The inclusion of children in a new CDC panel study of disability and the incorporation of measures of disability among children into the Behavioral Risk Factor Surveillance System would help remedy some of these gaps. The committee's recommendations to this point focus on the "data production" side of the disability monitoring system.
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